was tested for celiac last week as I have been diagnosed with vitamin B12 deficiency. One of the main causes of this deficiency in adults under retirement age is celiac. There is a history of it in my family. Well, I went mostly GF 5 months ago. I have had infractions as I am not as diligent with myself as I am the girls. I was getting wheat at least once a week. When I discovered the B12 deficiency and that the dr wanted to test me for celiac given the family history, I started eating wheat at every meal. I had already had some for three days in a row the weekend before. I ate it every day for 6 or so days. My test came back negative. My question is this -- given the family history, the obvious malabsorption issue with the B12 deficiency, and that I was never really gluten free, if I was celiac, shouldn't the test have come back positive? I know there is a high failure rate on the tests. I know I can't eat gluten - I get extremely grumpy (a huge understatement) and really constipated (again a huge understatement, I have been completely GF for 10 days and am still dealing with this).

I guess I am really just venting. I can't seem to get a definitive diagnosis for anyone in my family. The two people most likely to get a diagnosis won't get tested. Dad was diagnosed at 3 years old but that was over 50 years ago. He admits he probably does have celiac but won't do anything about it. His sister has all the classic and non classic symptoms but choses to ignore them but harrasses me about denying the girls a normal childhood.

Michelle

Some of us never had abnormal blood work but we felt sooooo much better going gluten free it was pretty obvious to us there was something that wasn't getting diagnosed by the current medical practices.

Personally, I don't need an official diagnosis to make my own health decisions when it comes to diet. I just tried the diet and it resolved so many problems. Then out of curiousity I got tested by Enterolab.com and learned milk is also an issue with me. So gave that up and felt even better.

As far as the children are concerned... I guess the decision to weigh is is having them spend perhaps a great deal of their lives burdened with other related autoimmune diseases, or potentially cancer, worth giving them a "normal childhood" (whatever that means).

I'd recommend you to read "Dangerous Grains" if you need a little extra incentive to stay with GF. If your relatives aren't interested in preserving their own health, there's nothing you can do. I know, I've tried!

Staying gluten free is not an issue. If anything, this "test" (adding gluten back in in large amounts to my diet, not the blood work) convinced me gluten is a big issue. I have been so stopped up I had to take something. I never do that. I have had to two other times in my life. It is like now that I am off, my body can't handle it.

The girls will be gluten free until they are adults. Then they will make their own decisions.

I am just really frustrated right now and probably pms-ing.

This is pretty much my story too. No one in my family has been diagnosed. The two likeliest candidates for a diagnosis were my twin and I. However, we got so sick, and so little help, we went GF on our own before we could be tested. By the time we figured out this was wrong, we were way too scared to ever eat gluten again.

By the way, I don't think 6 days will give you a positive result. Dr. Fasano (natl expert) wanted to keep my nephew was gluten for 2 months.

Don't be discouraged. I am pretty confident that the medical community doesn't understand the extent to gluten intolerance and that "celiac" is only a small part of the puzzle. I took both my kids off gluten as a result. I just couldn't take the chance that they were running at 75...65...55% throughout their childhood. I want them to be able to run at 150%.

Grace

The majority of people who are being hurt by gluten will test negative for CD. Gluten sensitivity is so much more than CD and DH. You are one of the smart people - you figured out that gluten makes you sick.

My two sons and I tested through Enterolab and I hope they never have to have the health problems I have had. As young adults, both have chosen to live GF.

"Denying your children a normal childhood" I think by living GF you are maximizing your children's potential. As Grace says - they will run at 150%

I have been trying to find the reference to the article about GF children with CD did better in school than the ones who did not follow the diet. Anyone remember that one?
Anne

I talked to a GI doc this week, and she said a gluten challenge was eating gluten everyday for a month. Someone else at our local CSA support group reported from the CSA conference that the gluten challenge was the equivalent of 4 slices of bread everyday for a month, if you want to do that to yourself!!

By the way, what kind of tests exactly did you have and what were your results?

Claire

It's very sad that she thinks a 'normal' childhood should be filled with illness and pain. It's even sadder to think that she'd wish that on her nieces.

You may have to just go with what you know and forgo any further testing. I, myself, have never been tested and don't care to be as it won't affect my diet one way or the other. Freedom from a lifetime of migraines (and apparently running to the bathroom right after dinner, which was always interpreted by my family as a way for me to get out of doing some of the dishes) is more than enough for me to stick, like glue , to this diet!

and apparently running to the bathroom right after dinner, which was always interpreted by my family as a way for me to get out of doing some of the dishes

Hi Kim,

When I was growing up we always called that "dishwashers diarrhea". It must have been common in our house also.

--Judy